Strategic Plan Question 2: How Can I Understand What is Happening?

Respondent 0013

a. Gaps and underrepresented research areas.
Idiopathic autism is not necessarily the result of some yet to be identified genetic cause. Environmental causes must be sought for the recent increased prevalence of autism. Consider combinations of two or more environmental factors - not just gene-environment interactions. Almost all infants are subjected to invasive obstetric procedures and neonatal treatments. Clamping of the umbilical cord, vaccinations, and antibiotic treatments do not cause apparent harm to most infants, but infants unlucky enough to suffer ischemic impairment of the brain (by clamping off postnatal placental blood flow too soon) may be at greater risk for injury from postnatal treatments. Vaccination is a highly visible intervention. Most of us are completely unaware of other interventions. We need to ask and be informed of all perinatal standard treatments. See my suggestion for a vaccine research strategy at: http://www.conradsimon.org/files/IACC4feb2009strategy.pdf

b. New opportunities.
Focus on the brain, and how it can be affected by all of autism's etiological causes. Blood flow and metabolism are not uniform throughout the brain. The brain is a collection of sensory and motor systems. The auditory system has greater blood flow and metabolism than any other component of the brain. The auditory system is the alerting system of the brain, and may be the essential system for general awareness at some level. Children with autism display hyperacusis and lack the normal (and expected) ability to learn language through the auditory sense. People working in the field of auditory processing should be encouraged to take an interest in the language disorder of children with autism. People working in the field of computational analysis of speech (as now in use to create subtitles for meetings) should likewise be urged to investigate what is missing in the autistic child's analysis of speech.

c. Research priorities.
See the recent paper by Russo N et al. Brain stem transcription of speech is disrupted in children with autism spectrum disorders. Dev Sci. 2009 Jul;12(4):557-67. As for greater male vulnerability see the paper I published with my dissertation advisor, Simon N, Volicer L (1976) Neonatal asphyxia in the rat: greater vulnerability of males and persistent effects on brain monoamine synthesis. J Neurochem. 1976 May;26(5):893-900. Look at effects of alcohol, Valproic Acid, Thalidomide, and other drugs on the brain. Alcohol affects brain stem centers of high metabolic rate, like the inferior colliculi and mammillary bodies, as do other drugs. See Husain K et al. Carboplatin-induced oxidative injury in rat inferior colliculus. Int J Toxicol. 2003 Sep-Oct;22(5):335-42. and Cavanagh JB & Nolan CC. The neurotoxicity of alpha-chlorohydrin in rats and mice Neuropathol Appl Neurobiol. 1993 Dec;19(6):471-9.

Respondent 0018

c. Research priorities.
We must recognize autism as a medical condition. We must learn to assess the medical condition of children with autism. We must learn to categorize children not by their level of function but by similar medical profile in order to ever hope to draw the correct conclusions from any research study looking into mechanisms or treatments.

Respondent 0023

John BestHating Autism blog

a. Gaps and underrepresented research areas.
We know what's happening. Mercury is preventing methylation and killing brain cells. Get the mercury out of the kids' brains.

b. New opportunities.
Try checking out studies on the APO-E4 protein as it relates to Alzheimer's. Since autism and Alzheimer's are the same thing, you might learn something.

c. Research priorities.
Call Mark Geier or Andy Cutler. They'll give you all the answers.

Respondent 0029

a. Gaps and underrepresented research areas.
What are the most effective methods and service delivery models for parent education? What are the best methods for teaching social communication and play to children and to families? What is the experience of families navigating public bureaucracies?

b. New opportunities.
Community participatory research models.

c. Research priorities.
Less emphasis on biomed and genetic research and more emphasis on service delivery, policy and cost effectiveness research.

Respondent 0035

a. Gaps and underrepresented research areas.
Teaching parents to view their child's behavior not as "autism" but as behavior that can be changed depending on how the environment is structured and the consequences that are provided. Research parent's abilities to view the diagnosis in this way and follow the necessary steps toward adjusting their child's environment and applying appropriate consequences.

b. New opportunities.
I don\'t know

c. Research priorities.
It is very important that parents understand that while their child is "autistic" there are ways to address the behavior and the behavior should not be excused as "symptoms of autism"

Respondent 0037

a. Gaps and underrepresented research areas.
You people took care of that. You backdoored the whole process which I will never forget. VACCINES ingredients,multiple shot at the same time and ones that are irrelevant.

b. New opportunities.
chelation mHBOT viral and bowel disease that is where your research should go

c. Research priorities.
environmental toxins and vaccine strain virus

Respondent 0046

c. Research priorities.
"How can I understand what is happening?" I suggest adding: Services available at a young age, Medicaid Waivers & explanation. I would like to see Legislation for families with children who have ASD, regarding State reciprocity for Medicaid Waivers. Many families are "trapped" in one State, unable to move due to fear of losing Medicaid Waiver services. The waiting lists in States average FIVE years! This feeds into the regression of goals mastered, and is extremely difficult for both the child and the family.

Respondent 0047

a. Gaps and underrepresented research areas.
True, honest information on immunizations would have, or at least COULD have prevented my twin grandsons from becoming victims of autism. The CDC has been dragging its feet for years to avoid having to face these issues, quite possibly resulting in the current epidemic we now face, and which continues unabated while the drug companies and insurance companies pave the way for yet MORE under-tested immunizations.

b. New opportunities.
The public needs to be made aware of the current epidemic in honest and straight-forward terms, and parents should be given enough information and the right to make INFORMED DECISIONS about what immunizations their children will have until the issue of immunization safety has been HONESTLY and TRUTHFULLY RESOLVED.

c. Research priorities.
When so-called experts speak on the subject of autism and immunizations, they should be required to give full disclosure of their financial relationship with any pharmaceutical or insurance company. How else can the public trust their "expert" opinions, if they don't reveal the truth about the fact that they are receiving (LOTS OF) money from the manufacturers of the vaccines they so heartily endorse as safe?

Respondent 0049

a. Gaps and underrepresented research areas.
The anecdotal quality of autism is understressed but also undervalued. Every individual on the Spectrum displays slightly different variations of similar symptoms. These differences make consistent therapy difficult, but they also make it more important to spot the similarities. What works for one individual might not work for another, but something similar to the original strategy (tweak it just a little to eliminate background noise, make it blue instead of yellow) might yield great results.

b. New opportunities.
Parent groups and advocates are not stressed enough for HFA (High Functioning Autistic) individuals. Severe needs ASD are easier to spot, but HFA tend to be ignored or mainstreamed before they have the necessary skills. The condition is either ignored or invisible to most school officials, and SpEd staff tend not to know how to tailor their support for the HFA.

c. Research priorities.
Provide additional research for HFA individuals. In many cases, they are capable of leading relatively independent adult lives, but they need interventions and therapies starting at a young age, they need strategies for navigating the neurotypical world, probably more than their severe needs ASD peers, because their condition "looks" less like "disability" and more like a behavioral problem.

Respondent 0052

a. Gaps and underrepresented research areas.
The most common things are 1) what does this diagnosis really mean for my child?, 2)what kind of things can I do to help my child? and 3)How is an autistic child different from a "normal" child? These seem pretty basic, but because of the spectral nature of the diagnosis, these vary like crazy from person to person and it is far from helpful to have people who only seem to recognize the extreme cases try to advise parents and families on this issue. Worst case scenarios are great for preparation purposes, but for parents who are just trying to get a handle on the now, they can be thoroughly defeating. I'm convinced that that is one of the major culprits behind all of the finger pointing that so many parents waste so much time on. I would also like to see more research done on the proposed connection between Autism symptoms and allergies- many kids see improvement after food allergies are ID-ed and addressed, could other allergies have a similar effect?

b. New opportunities.
More research needs to continue on how these kids process information, how to help them do more, and how to best deal with associated issues because these are the issues that will ultimately help our kids. Research on things that affect symptoms are also helpful, but only as a means to help our kids to reach their potential, as a witch hunt for a scapegoat.

c. Research priorities.
The focus has got to be on the people currently diagnosed and how to improve their lives. Parents and families need to know how to help their family member to improve their quality of life.

Respondent 0054

a. Gaps and underrepresented research areas.
The same as number one.

b. New opportunities.
Again, discontinue Gernsbacher's funding and not allow Steve Shore and John Robison to review research. Also, I feel that you should have at least one pro cure autistic as one of your public members. Or maybe more. Stephen Shore should not be allowed to be a public member as he is opposed to curing autism and that is the purpose for which the IACC was created.

c. Research priorities.
same as above.

Respondent 0057

a. Gaps and underrepresented research areas.
Know all the skill areas and age appropriate levels. Helpful for clinicians as well.

b. New opportunities.
teenage preparation for life skills and vocational skill building is very poorly done in general.

Respondent 0059

a. Gaps and underrepresented research areas.
* What role is vaccine playing in inflammatory diseases and mitochondrial diseases? *Vaccinated vs. unvaccinated study, even studying vaccinated vs. unvaccinated in siblings of autistic children. * Are deficiency in L-carnitine levels common, and what is the role of the immune system playing in interfering in the transfer of very long chain triglycerides across the membrane of peroxisomes, before they are directed into the mitochondria *I would like to know that the people working for this agency are not involved some way in the production of vaccines and their loyalty lays with the vaccine and pharmaceutical companies instead of those with autism and their families.

b. New opportunities.
Babies and the elderly are more prone to strokes. What role do vaccines play in bringing on inflammatory diseases that causes strokes, bowel disease, Kawaskis, autism, and a host of other autoimmune diseases? Environmental factors more than gentics needs to be studied. No one can control genetics but the environment can be controlled, and if controlled we can prevent autism! * vaccinated vs. unvaccinated study *Federal agencies have stepped on citizen's constitutional right: The right in their pursuit of happiness with disregard to vaccine injuries. *Tom Insel resignation would also advance research and knowledge too.

c. Research priorities.
*First Tom Insel needs to go and someone without prejudice towards vaccine injuries needs to be given the job as head of the IAAC. I suggest Bernadine Healy if she would have this job. *Vaccinated vs. unvaccinated Study * Study of siblings with autism that have been vaccinated vs. unvaccinated, AND SURE ENOUGH MONEY TO FINISH IT AND LOOK AT THE MEDICAL RECORDS. *Help those already damaged.

Respondent 0060

a. Gaps and underrepresented research areas.
Broader use of existing scientific data on medical conditions, such as motor and sensory problems, seizures, metabolic abnormalities, gastrointestinal pathology, mitochondrial dysfunction, inflammation and cognitive disabilities that accompany ASD. There is no recognition of inquiries underway, such as those by Autism Treatment network (ATN) documenting medical features in 15 academic centers. Harnessing of existing data to facilitate identification of environmental risk factors as a means to determine their effects on human health and to chemical exposures as they relate to ASD. Studies to investigate the toxic load present in affected individuals that could contribute to the severity of ASD and functionality of the individual. Expansion of research projects on the biology of autism informing causality from 4 to 25 projects with topics that include, but are not limited to, immune and metabolic. Expansion of biobank budget to provide for appropriate controls/resources.

b. New opportunities.
Use of data from National Center for Environmental Health National Health and Nutrition Examination Survey to facilitate the establishment of reference ranges for unusually high exposure levels to a toxicant within individuals/groups, identify the proportion of the population with toxicity levels above those with known adverse health outcomes, tracking time trends in exposures to determine what changed in the environment and set priorities for research on the health effects of exposure to environmental chemicals. Conducting body burden studies on our children to investigate the toxic load of toxins like mercury and aluminum, their combined and isolated toxic synergistic effects in the presence of other toxins, as well as when present with viruses and bacterial infections.

c. Research priorities.
Greater attention given to the role of environment and corresponding increase in research objectives in environmental research to better understand autism's etiology.

Respondent 0074

a. Gaps and underrepresented research areas.
I understand exactly what is happening. My son has an autoimmune encephalopathy due to overuse of vaccines in infancy. Your agency, as far as I can see, is part of the cover-up.

Respondent 0075

a. Gaps and underrepresented research areas.
The Medical Psychological Academic Community Claiming Concern With Autism (partly due to the constant pressures for correcting abnormal and misunderstood behavior) has put off and swept aside any form of complete understanding of The Neurological Condition That Can And Does Result In Autism. Consequently, to date, the real ROOT PROBLEM SET has been predominately misunderstood and ignored rendering a solid definition of the complex condition out of reach. Negative aspects of condition have been addressed (naively), and positive aspects neglected. Without the WHOLE PICTURE, understanding is not likely. We clearly have 70 years of poor progress to prove that.

b. New opportunities.
Understanding and studying the features of the personality of a person with the neurological condition that can and does result in autism, when organized in a SPRATS hierarchy, (Introducing acronyms for the hierarchies of section I c, IV b, and VI c) and then understanding the real-world Life Needs hierarchy, of that personality organized as R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI and then studying how the two hierarchies interact will go a notably long way to fully understand the abnormality, and bring HUGE progress in preparing now misunderstood, (but with great obfuscated value) children for success both as a child AND as an adult. We have the best experience available to demonstrate how to start and go about this. We can also demonstrate a sample SPRATS chart.

c. Research priorities.
The condition that fosters autism is an abnormality, NO question. However, the condition also OFTEN brings with it: SPECIALIZED PERCEPTIONS AND CAPABILITIES, rare skills useful for analyzing, simplifying, and solving complex, often interactive problems in various (almost any) science, technology or art. The 70 yrs of choosing to remain tightly focused on naively attempting to normalize the misunderstood behavior of frustrated, apprehensive, and worn down children, and then abandoning them as they age, has resulted in 90-95% of the subjects of behavioral treatments remaining seriously under, or un-employed. Of those luckily employed their national average annual remuneration is USD $6,000 (no typo, 6k). I'm lead to say that the historic approach of nearly GUARANTEES FAILURE AS AN ADULT. Appropriate recognition, encouragement, development, and application of the ignored positive aspects, STOPS unnecessary anguish, wasteful expenditure of resources, AND LIVES.

Respondent 0077

a. Gaps and underrepresented research areas.
I was diagnosed at age 12, and so I wasn't very clear about what AS was or how I was different. It took several years for me to grow and learn about myself, before I was able to be truly accepting of myself.

b. New opportunities.
How can we counsel children, diagnosed at early ages, with learning how to grow and accept themselves (along with myriad of problems associated with growing up)?

c. Research priorities.
N/A

Respondent 0105

a. Gaps and underrepresented research areas.
Although there is a very strong genetic component in ASD, environmental factors must also play a crucial role in their manifestation or not. I personally think that the concerns relating to vaccination have not been allayed. Vaccination, which is mandatory at this early age, constitutes an invasive method affecting the still immature immunological as well as neurological system, both of which are involved in ASD. Metals and other chemical compounds included in vaccines, and even in foodstuffs, could intoxicate the already vulnerable nervous system in children with ASD.

b. New opportunities.
More studies related to the Brain Barrier and Gastrointestinal Barrier connection and close interrelation, must be conducted. The experimental use of animal models could be allowed for these studies alone. Detailed questionnaires and protocols regarding persons with ASD must be in place to complete this study.

c. Research priorities.
Although there is no shortage of studies on High-Functioning and verbal persons with ASD, the same cannot be said for the low-functioning and nonverbal persons, who constitute almost half of the ASD population. Even the High functioning and Asperger's who are fighting successfully for their self-advocacy rights, tend to neglect those at the low end, as if they don't exist. More in depth studies focusing on the low end of the spectrum are essential, as this is a population that may conceal immense strength and potential yet to be discovered, revealed and used. Furthermore, the low end of the ASD is the population who needs the maximum of treatment and care. Although it is more difficult to perform a study at the low end of the ASD, it is worthwhile as these persons are more in need for therapeutic interventions and for unlocking their hidden potential.

Respondent 0116

a. Gaps and underrepresented research areas.
There is so much information available; it is often hard for parents to figure out what to do first / next. I have frequently advised parents on books to read and doctors to see in the area.

b. New opportunities.
A contact person / group in each area that can help parents. Right now the information is not organized and frequently unreliable.

Respondent 0125

a. Gaps and underrepresented research areas.
I do not believe this is a particularly relevant topic and wouldn't make it a focus of research.

Respondent 0131

a. Gaps and underrepresented research areas.
Supporting the development of research that addresses the efficacy of existing interventions aimed at mitigating behavioral and medical challenges should be a top priority. Specifically, research designed to contrast highly structured treatment to approaches aimed at improving social contextually based communication and the comprehension and production of spoken language, as well as examining the change in outcomes associated with the frequency, intensity and duration of treatment. Research that investigates the common practices in screening, assessment and treatment and how those practices are impacted by state and local interpretation of federal guidelines should be included.

b. New opportunities.
No comment

c. Research priorities.
No comment

Respondent 0133

a. Gaps and underrepresented research areas.
Open and honest discussion about environmental triggers (including immunizations) and the other typical health issues which surround a child (gastrointestinal and immune). Really looking at subtypes (it isn't autism it is autisms)...and co-morbity and creating models which are holistic in nature (Greenspans model) that takes into account Sensory Processing and family functioning, as opposed to linear medical models which are cause effect.

b. New opportunities.
see above

c. Research priorities.
More research dollars into risk factors (familial and environmental). More attention paid to the experiences of families with children who have an ASD. More seriousness given to the knowledge of the child (longitudinal studies) as s/he interacts in their environment.

Respondent 0137

a. Gaps and underrepresented research areas.
Clinicians need to be educated about the role of epigenetics in development and about the influence of oxidative stress and impaired methylation on development. This needs to be added to the medical school curriculum, residency training and to continuing professional education platforms in order to increase knowledge and awareness in a short period of time. Once this level of understanding has been accomplished in the professional ranks it should be communicated to parents.

b. New opportunities.
The scientific and medical communities need to reach a consensus that there is indeed a measurably metabolic abnormality that is a part of autism and this metabolic abnormality is related to development. Thus it is a reasonable and logical contributor to developmental disorders, which is fortunately amenable to some level of treatment, especially when recognized at an early age. In other words, the "Understanding" has to start with scientists, physicians public health officials etc. before it "Understanding" can be provided to parents.

c. Research priorities.
As above, the priority is to recognize the existing scientific evidence for an abnormal metabolic state in autism. Further clinical and basic science research will help to increase the impact, but the already existing evidence is clear. However, the health community finds it difficult to accept evidence of environmental effects that might be causing autism. Specific RFAs which focus on replication of the metabolic abnormalities and gauging their occurrence in phenotypic subgroups would be useful. Programs to promote understanding of the underlying metabolic relationships among medical professionals would be helpful.

Respondent 0140

c. Research priorities.
-To construct research groups on autoimmune conditions with the focus in the findings reported in ASD subgroups- based on immunologists, virologists, specialists in autoimmune conditions and researchers on medical conditions such as diabetes, lupus, arthritis, etc. -To analyze the context of the role of accumulation of environmental insults ( in the form of introduction of food, infections- especially in repetition. treatment with antibiotics and the role of the gut flora in the management of xenobiotics exposures- in combination in time. Impact of vaccines given in the oxidative stress and inflammatory reactions beyond efficiency, especially near antibiotics treatments or other medical conditions common in childhood ( allergies, GI issues) -To construct research groups on the role of the combination of the treatment of concomitant medical problems with the use of proper educative methods to enhance learning and communication issues in ASD

Respondent 0141

a. Gaps and underrepresented research areas.
If you ask 50 Autistic people a question about their behavior, such as, why do you throw tantrums?, you might get 50 different answers. Some may not be able to answer, and for others you may not be able to understand their answer. However, even if you only got 25 responses you could use, that's 25 possible areas of research! Probably, many of the answers can be grouped into categories like, social frustration, anger, sensory issues, or lack of other forms of expression. If you find that the two most common reasons for throwing a tantrum are, for example, anger and sensory issues, then you can focus research on how to best treat anger and sensory issues in Autistic people. Of course, the alternative would be to exclude Autistic people from the process, see only the tantrum (not the reasons for it), and try to control it through aversives, restraints, behavioral modification, medication, seclusion, etc. But that doesn't get to the core of the problem, and usually creates more.

Respondent 0146

a. Gaps and underrepresented research areas.
Recommend study of the role of affect on learning and development. Also recommend further study into the brain's plasticity and adaptability, regardless of challenges or diagnosis.

b. New opportunities.
Recommend focusing on sensory processing, registering, modulating and adapting to input, and diagnosis. Is there a relationship between sensory-motor challenges observed in early infancy and later diagnosis? Do family relationships affect diagnostic and treatment outcomes?

c. Research priorities.
Recommend that priority be given to the study of individual differences, both for the child and family, rather than on forensic study/research.

Respondent 0148

a. Gaps and underrepresented research areas.
See answers to #1 above

b. New opportunities.
Same

c. Research priorities.
Same

Respondent 0151

a. Gaps and underrepresented research areas.
Additional focus should be placed on the possible causes of ASD. Consultation with Defeat Autism Now doctors / scientists reveals many potential and even likely links between autism and environmental causes (including vaccination schedule, mercury (vaccinations, fish, and mother's amalgam fillings), pesticides,).

b. New opportunities.
Don't close the door on unfavorable possibilities. If evidence indicates a likely link, then exhaust the research before ruling it out.

c. Research priorities.
Recommend international coordination of studies such that the US budget does not duplicate studies already being performed in other countries (so long as the study is being performed in a manner that will stand up to scrutiny). Additionally, much information can be attained with regards to potential environmental causes based on the region. In areas that do not have autism in the high numbers that the US has, why not / what's different?

Respondent 0153

a. Gaps and underrepresented research areas.
Do Ultrasounds treatments contribute to the possibility of Autism?

b. New opportunities.
Extensive prenatal medical records exist for autistic and non-autismtic children showing durations and intensity of ultrasound events.

c. Research priorities.
More highly prioritize ultrasounds in research.

Respondent 0154

a. Gaps and underrepresented research areas.
Parents wouldn't be dealing with this crisis and epidemic if it wasn't for the government's ignorance to examine vaccines and the overuse of them coupled with antibiotic overuse.

b. New opportunities.
Understand that autism is a treatable disorder....it is a gut disorder that affects the brain not a brain disorder solely.

Respondent 0157

a. Gaps and underrepresented research areas.
Information needs to be issued in a simple, understandable (i.e. not a lot of medical jargon) format listing factual information based upon the latest research and studies. Basic information on brain function and development and how autism impacts this process would also be useful. It would also be helpful to have information regarding efficacy research for each of the interventions.

Respondent 0168

a. Gaps and underrepresented research areas.
Practical clinical guidelines that can be implemented on a large-scale basis.

b. New opportunities.
There needs to be a focus on rapidly developing screening panels for genetic, immunologic, metabolic, and other biological issues which are either core to autism or common associated features. The goal should be to identify the range of issues and then have treatments available to address the range of core and associated conditions as rapidly as possible.

c. Research priorities.
I am not sure what all the focus on brain and tissue donation will do to help people with autism now. This seems like a lower priority than identifying biomarkers or other tangible tests to identify areas which need treatment such as metabolic or immune issues.

Respondent 0173

c. Research priorities.
Again, parents often turn to teachers and pediatricians who seem to be at the bottom of the list of stakeholders. Teachers and pediatricians need to be kept up-to-date and informed of scientifically-researched findings so that we can assist families.

Respondent 0176

a. Gaps and underrepresented research areas.
Honestly explain that while little is still known about the origin of autism, its cause(s) and cure(s), there are many types of interventions, both biological and behavioral, that assist children with ASD in making significant developmental gain. Explain that each child with ASD is an individual and as such, will require an individual approach to developing the biological and behavioral supports necessary for advancement. Explain that help is available through Early Intervention (the federally funded birth-to-three program available in all states). Explain how Early Intervention works. Explain the transition from Early Intervention to school-based therapies. Encourage parents to learn as much as they can about ASD while also learning all they can about their children as this will assist them in making suggestions to professionals and educators to help their children succeed in environments away from home.

b. New opportunities.
Perhaps the greatest need for advancing knowledge and research is understanding that parents of children with suspected or diagnosed ASD may be terrified at the prospect of facing a lifelong, invisible developmental disability and that this fear may be pervasive and/or exacerbated by the extent to which a child is able to make measurable progress ESPECIALLY IN THE AREAS MOST IMPORTANT TO THE PARENT (such as reducing or eliminating meltdowns). Parents need to know that their child's ASD will create around him a care team (parents, educators, therapists). Educators, administrators, and therapeutic professionals need to know that their full participation as part of the care team is critical and that by assisting parents in biological interventions such as dietary changes and behavioral supports such as visual schedules, children may be able to make critical developmental advances that may be otherwise unattainable. Group coordination, support, and participation is a necessity.

c. Research priorities.
Research the effectiveness of the Early Intervention Program versus school-based interventions. Determine whether school is the appropriate setting for children with ASD to receive therapies such as occupational and physical therapy, or whether children are better served by having school-aged therapy at school (appropriate for creating success in the school setting) and home therapy and/or after-school therapy (daily) for overall skill-building in critical areas affected by ASD, most notably communication and perspective-taking. Since the school setting is organized for neuro-typical children who do not have issues of social blindness, determine the extent to which children with ASD naturally lose opportunities to gain understanding of social skills and practice such skills as they age. While their peers seamlessly intuit the social fabric of situations, children with ASD cannot. Determine the extent to which the school-based curriculum excludes their social advances. Remedy this.

Respondent 0181

a. Gaps and underrepresented research areas.
II. How Can I Understand What is Happening? We support the investigation of a biological basis resulting in the development of autism. We also support the research into high risk siblings. Recent research indicates that some children, particularly those with mitochondrial myopathy, may be more susceptible to developing autism. Research indicates that in addition to genetics, environmental factors also influence with development of autism so we support this multifactorial analysis. We are also concerned that families may be unaware of common comorbid conditions such as Fragile X and epilepsy which have serious health consequences and feel strongly that parents need to be informed of these common comorbid conditions.

Respondent 0187

a. Gaps and underrepresented research areas.
Research topics that are missing: Please include more nonverbal subjects in your research. No research has been done on this group. This is a critical area that is missing from the autism research 'road map'. See also my comments in Section I.

b. New opportunities.
Of critical importance: Research on nonverbal ASD individuals for measurable cognition, and also of early signs in child development so that nonverbal ASDs can receive earlier interventions.

c. Research priorities.
Focus on nonverbal autistics. This group has not been studied. Many assumptions are made, based on outward behaviors which may or may not be accurate. For example, disengagement visually may not be an indication that the subject is anti-social. Not initiating or performing on written tests, or not being able to speak may not be an indication that the subject has low-functioning intelligence. Some interesting studies have been done on patients with head injuries who are unable to communicate, that indicate brain activity and intelligence are still functioning. Individuals with cerebral palsy exhibit physical behaviors that are often associated with a lack of cognitive development and yet, many are of average or above-average intelligence. It has been the work of researchers, with these other nonverbal groups, that has brought about discoveries about their capabilities. ASD individuals need the same research consideration.

Respondent 0194

a. Gaps and underrepresented research areas.
There are three similar aims relating to the collection of biomaterials, but no aims specifically prioritizing research with these samples. We suggest priorities 2.1/2.4/2.6 be collapsed into a single priority. Additionally, we strongly encourage adding an additional priority endorsing the study of these biomaterials to identify the basic disease mechanisms that can be targeted for autism therapeutics. For example, neuropathological characterizations of tissue defects, clinical analyses guided toward biomarker identification, and study of postmortem neuroprogenitor cells are three critically-neglected areas of research, all of which can directly reveal the cellular and molecular basis of autism. Simultaneous study of genetic, stem cell (postmortem or iPSC), and brain tissue material would greatly accelerate the rate of pharmaceutical research by providing a platform for candidate gene research followed by in-vitro (tissue) and in-vivo (stem cell assay) verifications.

b. New opportunities.
Recent advances regarding generation of patient-specific induced pluripotential stem cells (iPSC) have made biobanking of patient fibroblasts (or other sources of iPSC) even more of a priority. However, these cell lines, and all biomaterials in general, will only be meaningful in the context of extensive clinical and phenotypic characterization of the donors. Therefore, we urge coordination at the earliest planning stages with the many large-scale patient phenotyping efforts currently being launched (including the National Children's Study, the many ACE grants, etc). Inclusion of stem cell biologists to the planning committees, and upfront discussion of patient consent, will greatly hasten collection of the biomaterials necessary for achieving autism iPSC. The gastrointestinal system should be inserted into Priority 2.2, especially if study of the microbiome is a stated priority (listed in the strategic plan text accompanying this question).

c. Research priorities.
An understudied population of ASD is low-functioning individuals, especially nonverbal individuals with ASD. Because of their routine exclusion from research studies, almost the entire body of what we know about autism is from higher-functioning individuals. Therefore, we strongly suggest this priority be extended to target low-functioning individuals and other understudied populations or, similar to females with ASD, their specific needs will continue to go unrecognized. One fundamental missing item in Section II is a prioritization of model systems for autism. As the cellular and molecular underpinnings of autism are elucidated and targets identified, model systems will be required to manipulate the target, develop screening assays, and perform the necessary preclinical studies for therapeutic development. Animal and cellular model systems should be prioritized, especially those that can be used in high-throughput screening.

Respondent 0200

a. Gaps and underrepresented research areas.
Where is the research on non verbal children and adults with ASD? What is being studied as to why they can make sounds but not words? What is being done to help?

Respondent 0202

a. Gaps and underrepresented research areas.
HELP! Research on "communication and movement disorders" are unrepresented and often times pushed under the asd umbrella, parents are left with no intervention, and no experts that know anything

c. Research priorities.
Please help this population

Respondent 0203

a. Gaps and underrepresented research areas.
Focus on sensory issues - what in the environment is causing distress?

Respondent 0210

a. Gaps and underrepresented research areas.
Ensure that a comprehensive research agenda includes the biological, cognitive, and socio-emotion impact of autism spectrum disorders on adults across later years in the lifespan (early, middle, and later adulthood) as a critical component of understanding developmental needs of this population and how environment and access to resources may or may not have significant impact, including a research project specifically targeted at the adult population. Research should include studying the impact of well-rounded, qualified multidisciplinary teams tasked with assessing the areas of the suspected disability and translating findings into programmatic designs. This multidisciplinary effort likely involves a team of special educators, general educators, psychologists, speech pathologists, occupational and physical therapists, and physicians, which can be challenging for schools lacking available experts.

b. New opportunities.
Advance the literature pertaining to making the appropriate selection of instruments given the triad of the disability and using key assessment instruments to make both clinical and educational decisions. It is critical that we advance information concerning the incorporation of assessment results effectively into an individualized program for individuals on the spectrum.

c. Research priorities.
It is critical that we advance information concerning the incorporation of assessment results effectively into an individualized program needs if we are to truly meet the needs of individuals on the spectrum. Additionally, we need to explore the efficacy of individual service plans for adults on the spectrum that have access to this type of individualized program after 22 years of age. Further, the assessment instruments and eligibility criteria used to determine eligibility for social service programs for adults on the spectrum warrants examination.

Respondent 0213

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

b. New opportunities.
As the population of individuals who are nonverbal/low-functioning is increasing, there will be more subjects and applications of this research.

c. Research priorities.
Evaluation and innovation of communication instruction for nonverbal, low-functioning individuals must be included in research funding.

Respondent 0228

a. Gaps and underrepresented research areas.
I am very concerned that very little, if any, research is being done to help nonverbal and low-communicating people on the autism spectrum. This segment of the population needs our help to become contributing members of society. Without the proper tools to communicate, they will always be dependent, their lives will be severely impacted and the cost to society enormous. I find it terribly short-sited to overlook them in the research and I am very disheartened to find out that this is the case.

b. New opportunities.
Start including nonverbal & low-functioning ASD children & adults in your research right away.

Respondent 0236

b. New opportunities.
It would be helpful to know where, in what kind of setting (private, public) a diagnosis can be most quickly gotten with the most amount of follow up.

Respondent 0241

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin your efforts to include this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
When not interfered with by outside influences, everything nature does is done with perfection.

c. Research priorities.
Simply to begin to include nonverbal low-communicating individuals in your research. How terrible a nightmare for those of us who struggle each and every day to draw the smallest bit of information, communication from nonverbal children. The turmoil one feels inside is most heartbreaking. Imagine not being able to know if the tears are reflective of pain or of a need and you simply have to use all your personal knowledge of your child's behaviors to draw a conclusion on what needs to be done. Is she hurt, hungry, angry, bored, tired. On and on it goes. Please help us help them...

Respondent 0244

a. Gaps and underrepresented research areas.
No additional comments...

b. New opportunities.
No additional comments...

c. Research priorities.
Suggest that Bullet # 3 (Human and animal studies that examine immune, infectious and environmental factors in the occurrence of ASD) be placed last in this list since a lot of people have beliefs that animal studies should not be considered as evidenced based...

Respondent 0245

a. Gaps and underrepresented research areas.
Sensory Integration and Visual differences and the role these difficulties have on social, functional and academic behavior and communication.

b. New opportunities.
Just like Helen Keller, society makes assumptions that if he cannot speak he must be retarded. What kind of research is your institute doing that would allow you to leave out nonverbal autistic children?

c. Research priorities.
Many nonverbal autistic children have written books and started speaking when they were teenagers or adults. Do you all know this? If not Google this topic so you don't make the same mistake again and start respecting the fact that Autism is a Spectrum: You can't leave out part of the spectrum.

Respondent 0246

b. New opportunities.
Test - test - test Do a study of individuals with autism Do a study of vaccinated v. unvaccinated populations Talk with parents who have treated their children successfully.

Respondent 0251

a. Gaps and underrepresented research areas.
verbal communication across the ASD spectrum

Respondent 0257

a. Gaps and underrepresented research areas.
Medical care to include traditional and alternative medicine and nutrition -- level of support to vary with patient profile - capability, need and commitment to health. Good to see reduced dependence on antibiotics, access to unhealthy foods.

b. New opportunities.
Pediatricians, alternative health care providers, nutritionists, etc. QU: Vitamin D. Recent studies indicate population at large is deficient. Vit D has important role in immunity and what if any is its role in autism? Should we be measuring this -- in children, adults, etc,... how to remedy and why is this happening??

c. Research priorities.
1. GI. Gluten sensitivity has been linked to autism. Many (save the Mayo??) believe the effect is under estimated -- better tests for gluten sensitivity are needed, etc. Gluten sensitivity leads to leaky gut... leads to deficiencies which possibly in some cases have neurological features among many other things. THE AREA IS SO UNDERSTUDIED. (Dr. Hajivassiliou is the gluten-neuro expert in England; K Reichelt did gut/opiate studies in Norway; P. Levitt is working on the risk of a disruptive signaling of the MET gene, Gi + autism, in US, etc.) 2. Autoimmunity. Familial patterns; its effect, how to defer and/or manage. 3. Nutrition. Malnutrition, often asymptomatic, is rampant and very unhealthy. How to pick up, remedy and why is this happening?

Respondent 0263

a. Gaps and underrepresented research areas.
Please update me directly and I would like to be advised of the outcome of my submission. Also update organizations like Autism Speaks.

Respondent 0268

a. Gaps and underrepresented research areas.
No one has studied Facilitated communication and what I refer to as partnered typing and attempted to answer the difficult questions. to do so one must ask what is actually occurring with the individuals involved. Without accepting a type of "telepathy" or "joining at a subconscious level", it doesn't make sense. With new brain imaging technology, I would like researchers first to acknowledge that it exists. I would then like to see myself or some other strong sender, hooked up to brain imaging equipment as the exchange is occurring. What areas if any in the brain are being activated? Am I somehow serving as a grounding agent?

b. New opportunities.
When I am involved in "joining", I sense we are writing in tandem. It feels like a meditative dance where we serve as each other's intermediaries. Coming from this higher vibration, where all information is instantaneous and not dependent on sensory channels, appears to be their reality. Forming a partnership may help them subdue their own chaotic flow and lower their vibrations to a level that balances their knowing to a point where they can express a stream of consciousness. I speculate that I serve as a bridge to help them understand our communication system and they serve as my bridge for increased understanding of mystical states. But, I believe, we both have benefited from the entanglement. I speculate that it is possible that our two energies formed together could be forming a third distinct vibration that is a combination of the two, similar to binaural beats or a chemical change.

c. Research priorities.
I would start with mental prompts. When I am sending mental prompts; many of my students transcribe information without being When I am sending mental prompts; many of my students transcribe information without being able to demonstrate typical concrete awareness. Since, I am able to anticipate what they are going to type, I am fully aware that information being transcribed can be influenced by my personal bias. If I am confused and don't know the answer, they are too. I hope that remaining open to ever-evolving changes in perspective answering the difficulty questions, eliminating what doesn't work will eventually lead us to something profound and valid to explore. I speculate that our understanding of vibration connections, with the help of these remarkable people is about to evolve. It is mind-boggling stuff that demands further explanation.

Respondent 0269

a. Gaps and underrepresented research areas.
not enough research into why some of these kids are nonverbal

b. New opportunities.
research into why some of the kids are nonverbal is a wide open field.......do it now

c. Research priorities.
we had better find out why some of the kids can understand speech but aren't able to produce it

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who do are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0276

b. New opportunities.
Most definitely the need is in the area of research on relatively or completely nonverbal individuals affected by autism. As the parent of a young adult, I have seen little research that applies to my son.

Respondent 0281

a. Gaps and underrepresented research areas.
1)What role does dyspraxia play in autism. 2)What available therapies impact or remedy the challenges of Dyspraxia the most...Traditional O.T., Masgutova Method, Feldenkrais, craniosacral...etc.

b. New opportunities.
While ABA has been the traditional approach for interventions. It can only do such...It is time to look beyond Autism as a behavioral/cognitive disability. The children who are nonverbal or very limited verbal abilities are deeply affected by Dyspraxia. We need to understand how Dyspraxia manifests itself...beyond the basic explanation "its motor planning". In fact, Dyspaxia is extremely complex...and there are many newer therapies that help with this. Masgutova Method, Feldenkrais, Neurologic Music Therapy, O.T. etc. We need to look beyond ABA which leaves children with ASD therapist dependent, low self esteem, low in self confidence....and still nonverbal. It is time to make technology a mandatory component for those who remain silent.

c. Research priorities.
It is time to focus on the neuro-motor aspects of autism and how it plays a role in children who remain nonverbal.

Respondent 0294

a. Gaps and underrepresented research areas.
Verbal people appear to be easier to work with.

b. New opportunities.
The field is wide open! 50% of autistic people don't speak or communicate.

c. Research priorities.
Start by looking at receptive language in the nonverbal.

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0306

a. Gaps and underrepresented research areas.
publicize to the world that these kids have a medical condition. Autism is a brain injury, not a developmental delay. Address the cause of these injuries - they're environmental - regardless of a genetic predisposition. If you don't find the trigger factor, it doesn't matter if a child is predisposed.

c. Research priorities.
take care of our kids. not the pharmaceutical company and not the doc. take care of the kids.

Respondent 0307

a. Gaps and underrepresented research areas.
I already understand what is happening. Tom Insel doesn't want to find out the truth that his brother's vaccine was that start of this epidemic. Tom, how about dealing with the conflict of interest you have by STEPPING DOWN and getting out of the way of legitimate research.

b. New opportunities.
Okay, this is really repetitive. LET'S DO MORE LEGITIMATE RESEARCH ON VACCINE SAFETY.

c. Research priorities.
You get nearly a billion dollars in funding. Perhaps putting at least half your budget to researching vaccine safety and the effects of vaccines on autism. You have already spent BILLIONS on genetic research and you have found NO LINK. Time to get your heads out of the sand and look at VACCINES!!

Respondent 0309

a. Gaps and underrepresented research areas.
VACCINATED VS UNVACCINATED studies. There are plenty of children who are un or under vaccinated. Until this is done, there will never be trust in the vaccination program.

b. New opportunities.
The IACC does not have enough parents and Autism Groups on the committee as stakeholders. The committee is made up mostly of government representatives. How can we see this process as transparent and really trying to help our community when there are not enough stakeholders on the committee that could out-vote the government agencies?

c. Research priorities.
Come up with a list of the top 20 or 30 priorities and ASK the Autism Community! Do the research that WE WANT done to help our kids!!!

Respondent 0310

a. Gaps and underrepresented research areas.
I understand there are many conflicts of interest among those in power at the IACC; I suggest that Dr. Insel and Joyce Chung resign. Otherwise the information eventually disseminated by the IACC will not be reliable by those who need to understand their child's diagnosis.

b. New opportunities.
I understand there are many conflicts of interest among those in power at the IACC; I suggest that Dr. Insel and Joyce Chung resign. Otherwise the information eventually disseminated by the IACC will not be reliable by those who need to understand their child's diagnosis.

c. Research priorities.
I understand there are many conflicts of interest among those in power at the IACC; I suggest that Dr. Insel and Joyce Chung resign. Otherwise the information eventually disseminated by the IACC will not be reliable by those who need to understand their child's diagnosis.

Respondent 0312

a. Gaps and underrepresented research areas.
Where is an expert in treating GI problem sin ASD kids??? For many children that is one of the first signs something is really wrong and frequently indicates the possibly of other health problems- especially immune dysfunction. Why so many clinicians and researchers who study Fragile X, Angelman's or Prader- Willi? They account for less than 5% of ASD children and have a totally different disorder. Why no focus on problems affecting at least 40% of ASD kids like regression and Gi disease? Where is a DAN! doctor? Where is Jane Johnson? Where is Peter Bell?

b. New opportunities.
Toxicology Why is my child sick all the time? Why do his blood tests indicate extremely high levels of AL? Why has IACC refused to study adverse vaccine reactions and regression? For many children these are one of the earliest clues to biological problems and regressive autism. How have these adjuvants affected his central nervous system?

c. Research priorities.
Study regression Study adverse vaccine reactions Study DIETARY interventions- which can be so simple and immediately helpful! Rather than endless studies on Fragile X which help no children- why not fund a GF/CF intervention study among regressive kids w/ GI disease?

Respondent 0318

a. Gaps and underrepresented research areas.
I believe the strengths and abilities of persons with ASD are well documented in the static realm, but I feel like explicit research into weaknesses in the dynamic areas are underrepresented. Dynamic abilities are the abilities needed for people to function in daily life and when they are lacking these abilities this has a direct impact on quality of life. RDI directly addresses deficits in these dynamic areas.

b. New opportunities.
Your aspirational goal for this section states that you'd like to discover how ASD affects development which will lead to targeted and personalized interventions. In researching the RDI program you will see that the protocol is organized into stages that correspond to typical development and each stage contains objectives that have been broken down into pieces by the process of reverse engineering. This reverse engineering process was done by looking at how we learn dynamic thinking within typical development and gradually following it back to its simplest prototypes in order to be able to make the typically intuitive process of typical development into a mindful process for whom typical development did not occur due to neurological impairment. Using these objectives it is possible to determine where any person with ASD has deviated from typical development track and the process by which to go about reestablishing typical development.

c. Research priorities.
Under long term research objectives I feel your first goal of comparing how biological, clinical, and developmental profiles of children with ASD change over time as compared with typically developing people is unnecessary as without proper interventions you are basically tracking how people with ASD brains are become more static as typically developing people's brains are becoming more dynamic. A bigger priority would be to focus on researching the RDI program and how it prohibits that from occurring

Respondent 0321

a. Gaps and underrepresented research areas.
Unfortunately, I seriously doubt I will ever "understand" why our public health agencies promote the policies they do...such as..mass vaccination of our armed forces prior to deployment that many feel "caused" Gulf War Syndrome.

b. New opportunities.
Urgent effort to undertake "precautionary" measures against "rushing" a new, untested... "swine flu" vaccine.... that will be given to millions of people to prevent a "pandemic" that has yet to occur.

Respondent 0324

c. Research priorities.
While finding the causes and potential medical interventions/prevention should receive high priority for funding of research, it seems that the amounts targeted are disproportionate to funding suggested for targeting research into intervention and support for those already living with ASD. My recommendation is to increase the amount targeted at finding effective interventions.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0328

a. Gaps and underrepresented research areas.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

b. New opportunities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

c. Research priorities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

Respondent 0329

a. Gaps and underrepresented research areas.
same

Respondent 0334

a. Gaps and underrepresented research areas.
Help us!

Respondent 0335

a. Gaps and underrepresented research areas.
parental support is a key feature. A recent study showed that many or most parents never come to terms with their child's autism. This leads to unhappy parents which, in turn, must be detrimental to the children.

Respondent 0336

a. Gaps and underrepresented research areas.
As Dr. Bernadine Healy stated on CBS News in 2008, we have not looked at the children who got sick shortly after being vaccinated. Epidemiological studies with ties to the drug industry will never end the controversy.

Respondent 0337

a. Gaps and underrepresented research areas.
Identify ASD categories based on endophenotypes and not solely on behaviors - Research effectiveness of instruction for parents

Respondent 0340

Respondent 0345

c. Research priorities.
listed more to parents, researchers involved in biomedical aspects of autism

Respondent 0353

c. Research priorities.
Prioritizing research in terms of a medical, not psychiatric or behavioral, model, is key to truly understanding autism. Brain variations can exist without disability, but autism includes immune and gastrointestinal components which, when left untreated, lead to permanent disability rather than the personality quirks and social differences of high functioning persons who are neurologically on the spectrum without having suffered environmental assaults in infancy or early childhood. Research into the medical aspects of autism needs to be prioritized. Continuing to focus on the behavioral aspects when behaviors are merely manifestations of the underlying medical conditions in children who are unable to communicate medical distress in a recognizable manner is a waste of resources. We know their brains are different - but why are they developmentally disabled, instead of just "different," like in generations past?

Respondent 0360

a. Gaps and underrepresented research areas.
A large scale independent study of vaccinated vs. unvaccinated children could put to rest (one way or the other) the possible role of vaccines in the current epidemic of neurological problems in children.

Respondent 0366

a. Gaps and underrepresented research areas.
I don't understand why so many of the people involved in autism research are related to people or are the people who have developed vaccines. I can see why so many people are afraid of the vaccines. The people who make them are easily seemed to be in some sort of monarchial or dictorial society. This type of club has not been well received by history... the research should only be driven by people without conflicts of interest and then you will see herd immunity again.

b. New opportunities.
The people in charge should have no political, corporate, or familial relationships to the vaccines developers and sellers.

c. Research priorities.
1. Rid the research community of all relatives, friends, and political connections of vaccine makers and sellers. 2. Make all autism researchers file a document stating exactly who they are related to, and what businesses they have been affiliated with and where all of their income comes from. This should be public information

Respondent 0367

b. New opportunities.
Look at the recovered children and how they were recovered. Duh.

c. Research priorities.
Stop looking at the gene pool and start looking at the recovered children. How did they recover? Why did they have an overgrowth of yeast? Why did they have metal toxicity? Why do they have such horrible bowel diseases? These children may have come into the world with a less than stellar immune system. All children were not created alike and a "one size fits all" health plan for all children obviously doesn't work.

Respondent 0368

a. Gaps and underrepresented research areas.
There is very little research done on adolescents or adults with autism.

b. New opportunities.
We need to investigate the physiology of adolescents and young adults with autism to determine the role that hormones may play in exacerbating the symptoms of autism. I say this because many young adults regress when they hit puberty; some become violent; many need to be put into residential placements. It's important to know what is happening in their bodies.

c. Research priorities.
Research on adolescents and adults with autism should be one of the priorities. So far, most of the research has focused on children. As the 1 in 150 children with autism become adults, it would be useful to know how autism will affect them through adolescence and into adulthood.

Respondent 0376

a. Gaps and underrepresented research areas.
Reinstate the vaccinated /unvaccinated study Replace Tom Insel due to his CONFLICTS OF INTEREST

Respondent 0379

a. Gaps and underrepresented research areas.
The vaccinated/unvaccinated study.

b. New opportunities.
The IACC Committee brought in parents and community interests and these recommendations, that were removed in January 2009, should be returned to the agenda.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0385

c. Research priorities.
While it's important to understand the cause of ASDs, an equal amount of time, money and resources need to be put towards helping the kids who already have it to have a happy and productive life.

Respondent 0388

a. Gaps and underrepresented research areas.
Support-Support-Education- and support!!!! Where is the support? Where is the "is this normal for my child?" I am one of those moms who read the first five years of development, there is no guideline for what to expect. There is only frustration at missed opportunity and odd jealousy when you encounter a parent with a now verbal ASD child. There is a tremendous feeling of missing out on some vital clue that would open the door to communication.

b. New opportunities.
new legislation and emphasis in insurance and education and research projects which provide access to services.

c. Research priorities.
Help those who are given the news to accept what has happened. Stop focusing on finding the reason and start focusing on "What Now" who knows the answer for why may come from the solution to what to do about it now. Stop writing off this generation as defectives in the pursuit to find the cause. Do we need to know the specific cause of cancer to find effective therapy, not really.

Respondent 0390

a. Gaps and underrepresented research areas.
There is too little focus on understanding individual differences in children with confirmed/suspected autism. There needs to be more attention to understanding the underlying profile of each child, including sensory and processing differences. Especially with the very youngest children, we need more information about what may be derailing their capacity to initiate and respond to the interactive exchanges that are built into the dialogue between typically developing children and their parents.

b. New opportunities.
New scientific techniques including neuro imaging can help us look in new ways at the developing nervous system, and begin to understand better the developmental course of disorders in relating and communicating. There needs to be particular emphasis on learning more about the visual system and how differences in processing of visual input can support or derail early interactive exchanges. We need to build on our understanding of typical exchanges between infants and their parents, and help find ways to modify the experiences of children having trouble with these early exchanges.

c. Research priorities.
We need to expand research on the unfolding interactions of infants and toddlers who are determined to be at risk for developing disorders of relating and communicating, and of those identified with early difficulties in this area. We need to learn more about the subtypes of these children, both in their early profiles and their developmental course.

Respondent 0391

a. Gaps and underrepresented research areas.
As to autism rates, unvaccinated cohort must be compared to vaccinated cohort

c. Research priorities.
As to autism and autism-related children, unvaccinated cohort must be compared to vaccinated cohort.

Respondent 0393

a. Gaps and underrepresented research areas.
The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them.

c. Research priorities.
Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group.

Respondent 0396

a. Gaps and underrepresented research areas.
Relationship-based therapies. I am concerned that the voluminous ABA literature is being judged as valid and more important than is based on numbers alone. Relationship-based data, while it takes longer to generate, is quite informative. It seems to me that there is a frenzy around ABA - that folks want it to hold more promise than it really does. Everyone seems to appeal to the amount of extant literature as making ABA valid.... when the relationship-based literature has much more content within it.

b. New opportunities.
1- Brain changes with development with and without intervention, and with different therapeutic approaches. 2- Adult outcomes given different developmental challenges in childhood. 3-Early identification 4- Different developmental profiles and their developmental trajectories 5-The value of understanding developmental, social and emotional, sensorimotor profiles, and family functioning profiles for understanding developmental outcomes. 6-The importance of establishing a relationship with the child and family to support and predict outcome.

c. Research priorities.
Do not let this field continue to be dominated by top-down, skill-based, and compliance-based approaches to autism. Children and more than a set of skills and many families are not establishing good emotional ties to their developmentally- fragile youngsters. Skill development is NOT what this area needs to attain a deeper understanding of the problem.

Respondent 0397

a. Gaps and underrepresented research areas.
Longitudinal research over time is much better than snapshots in time. I do not see much long term research proposed or done.

b. New opportunities.
I am not a medical person. I do not need what causes ASD. I need how to avoid it. I know that proper weight and exercise reduces heart attacks, but I do not know what I can do to avoid ASD in the newborns.

Respondent 0403

a. Gaps and underrepresented research areas.
None

b. New opportunities.
None

c. Research priorities.
None

Respondent 0406

a. Gaps and underrepresented research areas.
Study into possible genetic susceptibility in children should be looked at. The vaccine schedule should be adjusted for that subset of children. Insel should resign

Respondent 0408

a. Gaps and underrepresented research areas.
This question is intrinsically tied to causation and treatment and until you figure out those two questions, there is no point in answering "what is happening". Parents are left to do all the research themselves and troll the internet looking for answers. Parents will seek out support groups that fit their needs.

c. Research priorities.
This should be at the absolute bottom of the priority list.

Respondent 0409

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism need to be known as, very often, intelligent beings facing a long battle. More research needs to be done about how bright these individuals really are when given the right interventions and environments.

b. New opportunities.
Nonverbal and low-communicating individuals are not less of an individual because they cannot use verbal language. More opportunities should be available to exhibit the potential of these individuals. There are other means of communication such as gestural, written, pictorial, speech generating devices, etc. Additionally, more research needs to be done on curriculum and state standards regarding how to teach a nonverbal individual how to read and write.

c. Research priorities.
Of highest priority should be research to identify the individual's potential for all modes of communicating. Secondly, research for how to best teach the best mode to the individual. Lastly, how to teach reading and writing for the particular mode for that individual.

Respondent 0411

c. Research priorities.
Research by service providers that have a financial stake in the outcome of the study should be carefully considered. Autism is big business and people are making millions off of it. Consider the research studies posted on http://www.valleysnafu.com/eibt.htm (IACC Note: URL not
valid.) These service providers receive between $60k on up PER CHILD WITH ASD THAT THEY SERVE. They use these children without parental INFORMED consent in their research studies. Children in these research projects must have a minimum IQ and qualify in other areas. This has slanted the research.

Respondent 0421

a. Gaps and underrepresented research areas.
a observational study must be conducted of vaccinated/unvaccinated..it is imperative to the families affected especially in regressive autism that all environmental studies be done and especially unbiased studies done on vaccines. we don't believe the studies done as they are all connected with pharm/money. or a association with vaccine makers. there is no either or. or these have been done..even the # of vaccines before 6mos. has not been done compared to the 8 or 10 shots we as parents received in 80's...we would like the resignation of conflicted members of the iacc that we as parents worked so hard to get these provisions and are being ignored. Insel should step down as he has no intention of doing the studies as he is conflicted .

b. New opportunities.
the autism community has waited, waited, and waited more our young kids are now pre-adolescent and we are still waiting for effective programs. a whole body health approach. to move away from a mental health DSM. where is the real help? insurance won't pay for ABA..or supplements..etc....families are broke with injured kids. we need progress not more meetings.

c. Research priorities.
research priority on what is environmentally causing a explosion in asd ..replace or resign people who are wasting time and money in gene research it's been years...we have lost a whole generation of kids...

Respondent 0422

b. New opportunities.
What brain research is needed to explain how a child can accumulate 1000s of words and still not be able to string them together into sentences or communicate effectively. What new methods of communication can truly and effectively help bright children with no verbal skills to express their needs. What areas of the brain determine verbal language skills. My daughter is very teachable. Cant research in software or artificial intelligence come up with some method of communication?

Respondent 0426

c. Research priorities.
The most important thing on your list is to research "mechanisms of metabolic and/or immune system interaction with the nervous system." It is lunacy to continue to study how this illness affects eye tracking or gait or anything else when what we need to know it what is causing the illness.

Respondent 0430

a. Gaps and underrepresented research areas.
Research what happened around the time a child regressed. Take all incidents seriously. Most importantly just study these children.

b. New opportunities.
Same as above. It is documented on my grandson's 12 month 3 weeks visit that he was a normally developing toddler. He was talking, pointing, and playing games. He received 9 vaccines that day. Five months later on his chart is an official autism diagnosis from a developmental pediatrician at the University of MS. Five months!! However, no one is interested in studying him or the thousands of others with similar stories. This is inexcusable. Having been a part of mainstream medicine, I know how important patient history is. Until this move to protect the vaccine program people have always been listened to when giving clues as to what happened before an illness or disorder took place.

c. Research priorities.
Same as above. Study the children with regressive autism. Vaccines are not the only cause of autism just the most common. Make environmental factors the priority. Even thought I believe there is a genetic component enough money has been spent on the elusive autism gene. Go for the environmental trigger now.

Respondent 0436

a. Gaps and underrepresented research areas.
We need to look into various diets, such as gluten free/casein free, which may help individuals with autism.

Respondent 0437

a. Gaps and underrepresented research areas.
More research into neural underconnectivity

b. New opportunities.
More research into neural underconnectivity

c. Research priorities.
I feel this is very important to prioritize neural underconnectivity.

Respondent 0440

a. Gaps and underrepresented research areas.
What impact, if any, do parental attitudes have on adult outcome, and what factors influence these attitudes? How much impact do social environment and emotional support have on outcome and quality-of-life? To what degree is it possible to predict phenotype and/or adult outcome from genotype? What implications does this have for genetic testing? Addressing the ethical concerns surrounding essentially all of the research topics covered in this section. Again, it is imperative that autistics and disability rights scholars be involved in the bioethics discussions on these subjects.

c. Research priorities.
The priority of this section relative to others is appropriate, but more concern should be given to the ethics of the sort of research being undertaken here. Bioethics scholars with no background in disability rights are inadequate to address the relevant issues alone. Additionally, more emphasis should be placed on identifying how autism spectrum conditions manifest in females and determining if (and by how much) underdiagnosis is occurring.

Respondent 0445

a. Gaps and underrepresented research areas.
A clear need exists to advance understanding of the many phenotypes of ASD, including studies that link genotype to phenotype, investigations of natural and treated history, analyses of genetic interaction with environmental exposures, and studies of co-occurring medical conditions.

b. New opportunities.
MRI cat scans EEG's etc all need to be done at an early age if suspected

c. Research priorities.
open up autism waivers with Medicaid and help parents fight insurance barriers

Respondent 0446

a. Gaps and underrepresented research areas.
Since the IACC is about curing Autism, why is the only person that has an Autistic condition, Stephen Shore, someone who opposes cure? Please also put someone on the panel who lives with Autism and finds this makes life a struggle. To not do so gives the appearance, whether intended or not, of choosing sides.

Respondent 0454

a. Gaps and underrepresented research areas.
I already understand what is happening. Tom Insel doesn't want to find out the truth that his brother's vaccine whether was that start of this epidemic. Tom, how about dealing with the conflict of interest you have by STEPPING DOWN and getting out of the way of legitimate research.

b. New opportunities.
Please do more objective research and study the current vaccine schedule and its effect on the immune system of these children.

c. Research priorities.
Vaccine and environmental research that is unbiased that can determine whether the current vaccine schedule, vaccine ingredients and pollutants have a role in the ever increasing autism epidemic.

Respondent 0455

a. Gaps and underrepresented research areas.
We need to have different diagnoses for children on the spectrum. High functioning and low-functioning is not acceptable.

c. Research priorities.
There should be different diagnoses based on the variety of symptoms. There needs to be evaluation of everything (allergies, sensory, developmental, occupational, eating, physical, etc) into a large database.

Respondent 0458

a. Gaps and underrepresented research areas.
I believe the creation of "subgroups" of individuals with autism is critical. The population is so heterogeneous that unstratified studies may miss genetic, biological or behavioral interventions that have a low or moderate success with all autistic individuals but a high success rate in a subgroup such as nonverbal individuals.

c. Research priorities.
I believe that postmortem brain and tissue research should be a priority as it may lead to a medical treatment that corrects symptoms.

Respondent 0461

a. Gaps and underrepresented research areas.
Research into the amount and types of vaccines and it's affect on the immune system and as one of the possible causes of autism/autistic symptoms. Study on rates of autism in vaccinated and unvaccinated populations

Respondent 0463

a. Gaps and underrepresented research areas.
While the need for research on co-occurring medical conditions is highlighted in the "What do we need?" section of question #2, there are no short- or long-term goals indicated. Clinicians who care for children with autism report a variety of co-occurring medical conditions, including metabolic abnormalities, oxidative stress, mitochondrial dysfunction, body burdens of heavy metals, gastrointestinal dysfunction and pathology (constipation, diarrhea, ulcerative colitis, esophagitis, and malabsorption), dietary allergies, and immune abnormalities as common in this population. They also report that appropriate identification and treatment of these underlying medical abnormalities often result in improved behavior and in some instances a loss of ASD diagnoses. Investigations into both the incidence of these co-occurring medical conditions and into best practices for effective treatment represent a critical unmet need.

b. New opportunities.
It was reported at IMFAR 2009 that approximately 1 in 10 children diagnosed with an autism spectrum disorder might recover. This finding is supported by recent data released from the National Children's Health Survey, in which over 80,000 U.S. households were surveyed regarding the health of their children. Researchers found that 1% of the households surveyed had a child with autism. They also reported that 0.6% of those said that the child had the condition at some point, but not currently. Recovery from autism represents new phenomena that deserve heightened research attention. Recent research also confirms parental reports of regressive autism. We believe there is much information to be gained from intensive evaluations of infants and toddlers during the reported timeframe of regression, including detailed historical data, an extensive physical exam, brain imaging, and laboratory parameters that elucidate the function of a wide range of metabolic, immunologic, and toxico

c. Research priorities.
The above research opportunities should be made a high priority and added to the NIH list of short-term objectives. All research should be prioritized to reflect the urgency of the goal of restoring health to those affected with the disorder, as well as the prevention of new cases.

Respondent 0464

c. Research priorities.
It would be great to have some research done with the low-functioning kids with Autism. I understand that it is difficult to conduct research with nonverbal low-functioning children, but it is also discouraging as a parent to see so much focus on the high functioning kids knowing that kids like my daughter are being left behind.

Respondent 0472

a. Gaps and underrepresented research areas.
While basic research can be important, we also need to think about how such research can be applied to help autistic people (of all ages) better learn and be comfortable and successful in society. Neurological differences show the need for new educational tools which can allow autistic people to learn in a neurotypical-centric society. Hopefully research can point the way in the development of such tools and educational programs. Identification of these differences is only valuable in their capacity to help autistic people live as autistic people.

b. New opportunities.
While I support neurological research about autistic people, we should not, upon entering such research, make the biased assumption that autistic brains are innately inferior to non-autistic brains. (Just as research into the neurology of sex-differences should not assume that one sex is superior.) There is much to learn about autism and neurology in general, but we are hindered in our pursuit of knowledge if we enter it with biases and assumptions.

Respondent 0473

c. Research priorities.
Need for a "crisis-response mode" similar to that used for SARS, bird flu and other emerging epidemics. Apply models that have proven successful for other childhood diseases " polio, cystic fibrosis, childhood cancers" with high rate of family participation in research. Two lines of research suggested: 1) Short-term, clinically meaningful studies that will help currently affected children/adolescents/young adults particularly relief of core symptom domains and associated medical problems (GI disease, immune dysfunction) 2) Mechanistic studies that will yield information about the cause of autism and lead to development of appropriate prevention strategies

Respondent 0476

a. Gaps and underrepresented research areas.
M...(partly due to the constant pressures for correcting abnormal and misunderstood behavior) has put off and swept aside any form of complete understanding of The Neurological Condition That Can And Does Result In Autism. Consequently, to date, the real ROOT PROBLEM SET has been predominately misunderstood and ignored rendering a solid definition of the complex condition out of reach. Negative aspects of condition have been addressed (naively), and positive aspects neglected. Without the WHOLE PICTURE, understanding is not likely. We clearly have 70 years of poor progress to prove that.

b. New opportunities.
Understanding and studying the features of the personality of a person with the neurological condition that can and does result in autism, when organized in a SPRATS hierarchy, (Introducing acronyms for the hierarchies of section I c, IV b, and VI c) and then understanding the real-world Life Needs hierarchy, of that personality organized as R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI and then studying how the two hierarchies interact will go a notably long way to fully understand the abnormality, and bring HUGE progress in preparing now misunderstood, (but with great obfuscated value) children for success both as a child AND as an adult. We have the best experience available to demonstrate how to start and go about this. We can also demonstrate a sample SPRATS chart.

c. Research priorities.
The condition that fosters autism is an abnormality, NO question. However, the condition also OFTEN brings with it: SPECIALIZED PERCEPTIONS AND CAPABILITIES, rare skills useful for analyzing, simplifying, and solving complex, often interactive problems in various (almost any) science, technology or art. The 70 yrs of M... choosing to remain tightly focused on naively attempting to normalize the misunderstood behavior of frustrated, apprehensive, and worn down children, and then abandoning them as they age, has resulted in 90 - 95% of the subjects of behavioral treatments remaining seriously under, or un-employed. Of those luckily employed their national average annual remuneration is USD $6,000 (no typo, 6k). I am lead to say that the historic approach of M... nearly GUARANTEES FAILURE AS AN ADULT. Appropriate recognition, encouragement, development, and application of the ignored positive aspects, STOPS unnecessary anguish, wasteful expenditure of resources, AND LIVES.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
Various organizations in Florida provide information and assistance for people diagnosed with ASD and their families. Many organizations house websites that provide information and support networks which families and professionals can access in order to make informed decisions about treatment options. Florida autism associations make efforts to educate lawmakers and the school system to effectively provide resources to enable people with autism to live meaningful lives. Autism advocacy groups in Florida often pursue information on a national level which includes collaborating with local educators to implement ideas for programs and treatment successfully. Some organizations make treatment clinics available, emphasizing Intensive Behavioral Intervention programs.

b. New opportunities.
Florida implemented the Governor's Task Force on Autism Spectrum Disorders under Executive Order 08-36 on March 7, 2008, Governor Charlie Crist established the Task Force on Autism Spectrum Disorders in order to set a unified agenda to address the needs of individuals with autism. The task force met initially to submit a report to the governor outlining recommendations, legislative accomplishments, and progress. The task force represented 18-22 members appointed by the governor, including parents, health care providers, representatives of state and local government agencies, advocates for autism, and other professionals with an interest in autism. The director of the Florida Agency for Persons with Disabilities, and Dan Marino, formerly with the Miami Dolphins and parent of a child with autism, served as the co-chairs.

c. Research priorities.
In Florida, students with autism are eligible to receive exceptional student education services if there is evidence of an uneven development in language, social, adaptive and/or communication skills; impairment in social interaction with people or the environment (absent, delayed, atypical); impairment in communication skills; restricted repetitive and/or stereotyped patterns of behavior; reference to evidence of onset during the first three years of life has been deleted. The Special Policies & Procedures (SP&P) content must comprise of a comprehensive evaluation of the student that includes a psychological and speech/language assessments, development, and a review of medical information. (Rule 6A-6.03023, FAC) The Florida Statute 48-1004.55 (2007) established seven regional autism centers at a state university under the direction of the Florida Department of Education to provide information, resources and training for individuals with autism and pervasive developmental disorders.

Respondent 0481

a. Gaps and underrepresented research areas.
I am pleased to see that research on the unique strengths and abilities of the Autistic population is one of the topics mentioned in this section as a research opportunity. It appears to have been thoroughly ignored, however, in formulating both short and long term goals.

b. New opportunities.
A longitudinal study could be very helpful in improving understanding of what leads to good outcomes for Autistic people. At present, many people are making assumptions and unwarranted claims that certain therapies or approaches will bring about good outcomes, without any long term data to support those claims.

c. Research priorities.
Research on Autistic strengths and abilities should be included as part of the longitudinal study suggested in the long term objectives section, with an emphasis on investigating how these strengths can lead to positive outcomes in adulthood. There should be less of a focus on brain tissue and other biomaterials, and more resources devoted to understanding how the social environment, including cultural attitudes toward Autistic people and how these attitudes are manifested in the schools and elsewhere, influences the development of a child.

Respondent 0484

a. Gaps and underrepresented research areas.
Alternatives to drugs. Individuals need to cope with being different, so they need to understand the how and why of the symptoms and how others have coped. We need to concentrate on approaches others have used that have proven to be successful and do more research on those. Individuals with Autism share coping mechanisms all the time and some are very helpful. While some have identified genes as being the cause how can anyone determine if the difference is good or bad? Perhaps the difference in the genes is a good phenomenon.

Respondent 0485

a. Gaps and underrepresented research areas.
Definitions of success are also absent, as well as mechanisms to evaluate success.

Respondent 0488

c. Research priorities.
When conducting longitudinal studies of biological, clinical and developmental profiles of children, include measures of relationship skills, family and child quality of life and complex cognitive skills. Do not restrict developmental measures to standardized IQ and language tests! These measures do not capture the dynamic nature of real world relationships.

Respondent 0493

a. Gaps and underrepresented research areas.
Ask the parents. They watched their beautiful children disappear. Pharma didn't watch their babies loose skills and then be told you don't understand science.

Respondent 0494

a. Gaps and underrepresented research areas.
Your report states: In the case of the immune system, a number of hypotheses concerning how disruptions might contribute to ASD and other neurodevelopmental disorders have emerged in recent years. Some recent findings suggest that the immune systems of parents and their children may affect early brain development and the onset and fluctuation of symptoms in some children with ASD (Pardo, Vargas, & Zimmerman, 2005). For example, research on the effect of maternal antibodies, proteins produced as part of the immune response, on an array of fetal brain proteins suggested that in some cases maternal antibodies could interfere with normal brain development (Braunschweig et al., 2008). The autism community has discussed immune issues for years. Why do we inject our children with so many toxins and diseases knowing there is a connection with immune disorders and autism? Once again, back to the subject of vaccines.

b. New opportunities.
Why are the rates of autism different in most states or even areas of a same state?

c. Research priorities.
Research on vaccines and anything else that goes into our bodies must be researched. The damage that is caused by antibiotics, steroids and pesticides in our foods must be researched. The usage of antibiotics in babies must be researched.

Respondent 0501

a. Gaps and underrepresented research areas.
The biological approach is offensive. Understanding what is happening isn't about the biology of the child, but what the child experiences! Researchers on autism should focus on understanding the *people*, not the disorder. Understanding the people will help develop strategies that can overcome adverse symptoms.

b. New opportunities.
Focus on the quality of life aspects involved in autism. How to handle differences in experience sensory stimuli. An example would be answering the question: "What can I do as a parent to make loud noises less painful for my autistic child?" Or "How can I help my child cope with frustration so he/she doesn't hurt herself/himself or others?"

c. Research priorities.
Biological markers should be a very low priority. Put the *people* as your top priority, not the disorder.

Respondent 0502

a. Gaps and underrepresented research areas.
More research is needed on girls and ASD, and Asperger's Syndrome in particular. Would like to see research into "selective mutism" and its relation to ASD. Still more research needed into what it means to be a "verbal autistic."

b. New opportunities.
More research about how well families of autistic people understand what is currently known about the science of autism, what facts are established, and what the open questions are. If the evidence indicates families don't understand "what is happening," what are they missing and why?

c. Research priorities.
NIH grant to Children's Hospital of Orange County re: neural stem cells donated by autistic children is a step in the right direction. "Research on the unique strengths and abilities of people with ASD" = very important. The spectrum has broadened and includes all kinds of people. Fear mongering in the media has kept some parents from getting help for their undiagnosed child, fearing stigma or blame for the condition. Needs to be more acceptance of "difference," less fear of autism.

Respondent 0505

a. Gaps and underrepresented research areas.
Lack of government trust: Topic should explain that actions by IACC leader have sabotaged public trust in government. Technologies on the horizon: Virus oligo microarray chip by Dr. Joe DeRisi could be used to screen for viruses in blood, CSF. This has merit given the evidence of a inflammatory process in brains of ASD individuals found in posthumous examination

b. New opportunities.
Should explain that Tom Insel holds closed door meetings to un-do votes to research vaccine safety that the government collectively cannot be trusted.

c. Research priorities.
Tom Insel must leave. Vaccine safety should be the first addressed and most heavily, generously and cynically scrutinized. A previously unknown viral cause should also be explored using oligo microarray screening/exploration. Primate research on common household chemicals and prescription and OTC drugs.

Respondent 0506

a. Gaps and underrepresented research areas.
While we applaud the NIH's emphasis on biobanking, we would like to emphasize the importance of leveraging large research networks and consider supporting collection of biomaterials that go beyond DNA and cell lines. Centralized methods for collection, storage, and distribution of urine and other biologic materials are sorely lacking.

b. New opportunities.
We would like to suggest that the NIH leverage their investment in the Clinical and Translational Science Awards (CTSA) to support biobanking efforts at each of these sites, especially those that support clinical and research programs for individuals with ASD and other neurodevelopmental disorders. Additional funding could support these efforts in a coordinated fashion and would significantly accelerate the pace of research.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
1. What causes ASD and Asperger's Disorder? 2. Multiple Vaccinations - possible causes of ASD 3. Baby food/formula (including additives) - possible causes of ASD 4. # of babies born during the 1980's with ASD 5. # of babies born during the 1980's with ASD who were premature and weighed less than 2 pounds. 6. The commonalities and differences of ASD and Asperger's Disorder. 7. Population of those with Asperger's Disorder, specifically, adults.

b. New opportunities.
1. Town Hall Meetings. 2. Access to Data Sharing for the public to see and part-take in.

c. Research priorities.
Age - oldest population, first, and so on.

Respondent 0509

a. Gaps and underrepresented research areas.
"Multi-disciplinary, longitudinal, biobehavioral studies of children, youths, and adults beginning during infancy" and "Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children" must include gathering data on vaccine history as one of the factors to be studied. If NIH has vested interests preventing objectively doing this research, funding must be granted through anther organization, such as SafeMinds, Generation Rescue, or National Autism Association. The vested interests of NIH must not prevent this research from happening. The IACC must fund research on vaccines in relation to autism.

c. Research priorities.
Get off your "The research has already been done" high horse. This is NOT SOCIALLY CAUSED and can be researched in the body. Priority = environmental and biological ischema event prevention.

Respondent 0519

a. Gaps and underrepresented research areas.
Use of existing scientific data on medical conditions that accompany ASD. Use of existing environmental data to identify environmental risk factors to determine effects on human health and to chemical exposures. Body burden studies on toxicity levels.

b. New opportunities.
National Center for Environmental Health National Health and Nutrition Examination Survey data should be used to establish reference ranges for unusually high exposure levels to a toxicant, identifying populations with toxicity levels above those associated with adverse health outcomes, time trend tracking of exposures to reveal changes in the environment and set to priorities for environmental research. Conducting body burden studies.

c. Research priorities.
Greater emphasis on the role of environment and corresponding increase in research objectives to better understand autism's etiology.

Respondent 0521

a. Gaps and underrepresented research areas.
true measure of intellectual and functional ability in low & nonverbal people with autism

b. New opportunities.
research into skill and knowledge competence & deficit in low and nonverbal people with autism

c. Research priorities.
research low and nonverbal people with autism. The measures of intelligence for these children are archaic. Methods like Rapid Prompting Method (RPM) and FC (Facilitated Communication) merit more thoughtful and respectful consideration

Respondent 0524

a. Gaps and underrepresented research areas.
We need to define "autism" or perhaps "autisms." This 1 in 150 number (or perhaps it is becoming 1 in 100) is very misleading as it is a catch all for everything from classic autism to PDD-NOS to Asperger's. When I protest that my son does not have a disease or need to be cured, people say, "Well, that's because he's high functioning [which is only true sometimes, by the way] so he doesn't count as really autistic." To which I reply, "Okay, fine, then don't use him in your 1 in 150 scare numbers. Because having people like my son in the world is not a problem.

b. New opportunities.
We need to research how many people are being diagnosed with what kind of autism, to see which part of the spectrum is increasing. We need to interrogate what "functioning" means and how it can vary within a single individual over short or long periods of time.

c. Research priorities.
We need to stop wasting money researching a vaccine link.

Please note that all comments are provided in their original form and in their entirety with the following exceptions: 1) Spelling errors were corrected and abbreviations changed to full length words to facilitate readability and text searching and 2) profane language was redacted. Respondent numbers in the RFI are not sequential due to test cases (technical staff and others submitting dummy data to test the system, which took up a respondent number each time) and unsubmitted responses (did not hit "submit" button, despite automated reminders to do so) that were logged into the system. Also, some respondents did not provide answers to every question or subquestion. Blank responses were not posted. The comments posted reflect the opinions of members of the public who responded to the RFI. These comments are not endorsed by and do not represent the views of the Federal government.

The responses to the IACC RFI are organized by Strategic Plan question. All of the responses to each question and sub question (Parts a, b, and c where applicable) are grouped together to allow the reader to easily review all material submitted in response to each question. When reviewing the responses, it may be helpful to understand that responses were submitted sequentially. Comments such as "previous" or "see above" sometimes refer to parts a or b of a person's response for the same Strategic Plan question, but in other cases refer to parts of a response to an earlier Strategic Plan question. In the case of the latter, the earlier comment referenced can be located by navigating to the Strategic Plan question indicated and then finding the respondent number associated with the comment of interest. Similarly, respondents sometimes referenced readers to previous responses by listing a specific question number (e.g. See IIIc). These materials can be located by navigating to the question listed and locating the respondent number of interest.